Boy, 6, copes with sickle cell Treatment now routine and a day to play is a good day

November 17, 2005

Emanuel Neily Jr. loves to play outside, just like other 6-year-old boys. But he often can't. Just like sometimes he can't attend his kindergarten class at Muessel Primary Center. When he was a week old, Emanuel was diagnosed with sickle cell anemia. Sickle cell is a blood disorder, primarily among African Americans, that causes people to tire easily. "Sometimes I hurt," Emanuel said. "But I feel good. I'm going to play today." Emanuel had some real problems at the beginning of his treatments. He used to cry and get upset every time he visited Dr. George Maher's office at Memorial Hospital. He knew he would be stuck by a needle so blood could be drawn. "He used to be traumatized," explained his mother, LatoniaJohnson. "He was getting poked all the time." But now, Emanuel has grown accustomed to the clinic and to the complex treatment that keeps him alive. He now greets the doctor with a shy smile, and he offers his arm easily for the now-routine blood draws. His nurse, Sue Rector, has helped him understand sickle cell. About 2 million African Americans -- one in 12 -- carry the sickle cell gene. A child inherits the condition only when both parents carry the gene. About 70,000 people in America suffer from the sickle-cell condition. Rector said sickle cell gets its name because the person's red blood cells are shaped like sickles, or crescent moons, instead of their usual round, flat shape. Treatment depends on the severity of their disease. Some patients require regular blood transfusions. Others get by with medicine. Because of the risks, Emanuel has to be watched very carefully and doctors have to make sure his hemoglobin level does not drop. His sister, Marie Easton, helps keep a watchful eye on her little brother. "I'm just glad he's still here with us," Marie said. "I keep my eye on him and when his eyes get yellow, I tell my mom and she takes over." On this day, he's feeling great and his spirits are high. "I just want to let some of the mothers out there know how important it is to have your children checked," Johnson said. "When I was told he had sickle cell, at first I was ashamed and thought it was my fault, but I quickly got over it and sought treatment for my son," she said. It can be a struggle for a family. Emanuel's mother is a single parent and can't work because of his many doctor visits. But with the help of his twin aunts, Topeka and Tomeka Lloyd, the family is surviving. "I don't know what I would do without my sisters," Johnson said. "They always step in to help me, and they know just what to do for him should he get sick while in their care." His friends and family are touched. They are amazed that he doesn't whine or complain. He does have one special wish. Because he can't go out to play much, he would like to have a way to play inside. "I can't wait till Christmas," he said with his big, toothless grin. "I'm hoping Santa can get me an Xbox (video game system)." If Santa Claus listens to good little girls and boys, maybe he'll get his wish.Staff writer May Lee Johnson: mjohnson@sbtinfo.com (574) 235-6326 May Lee Johnson Tales from the West Side May Lee Johnson is a Tribune staff writer.